tag:blogger.com,1999:blog-8824828113983189391.post950996336345957780..comments2017-08-17T07:56:49.512-04:00Comments on Despite Lupus: Lupus, Plaquenil, and my eyes: the whole sordid storySara Gormanhttp://www.blogger.com/profile/07608238591846611898noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-8824828113983189391.post-17216771192969299462014-06-07T11:14:28.826-04:002014-06-07T11:14:28.826-04:00Thanks so much, Sara!
Lupus for 33 yearsThanks so much, Sara!<br /><br />Lupus for 33 yearsLupus for 33 yearshttps://www.blogger.com/profile/18153002594694521533noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-81553448817001415992014-06-05T18:32:20.356-04:002014-06-05T18:32:20.356-04:00Hope you can get that flare under control! No advi...Hope you can get that flare under control! No advice on the plaquenil at this point - I&#39;m going to have to let your doctors hash this one out. I don&#39;t want to give you more conflicting info! Although be sure to let them all know you&#39;re getting differing opinions. I sat on a panel alongside a couple of doctors at a lupus seminar recently, and the subject of conflicting info came up. The doctors all said how important it is for patients to let them know when they get conflicting info. otherwise they might not ever know you&#39;re trying to juggle opinions. Not all doctors are always going agree, but they can at least provide you with add&#39;l info so that you can make an informed decision. FYI - I just had an ERG a few weeks ago. Yuck - those things are the worst! :) thanks so much for your comments!Sara Gormanhttps://www.blogger.com/profile/07608238591846611898noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-35814279637634049982014-06-02T18:38:54.383-04:002014-06-02T18:38:54.383-04:00Hi Sarah, I am so happy to read your blog posting...Hi Sarah, I am so happy to read your blog posting on July 18, 2011 about plaquenil and retina toxicity. I took plaquenil for 14 yrs and stopped in 2010 because I couldn&#39;t pass the visual field test and my ophthalmologist sent me to a retinologist and then on to the doctor who does the ERG testing. The finding was &quot;possible early effect on the right eye&quot;. I was asked to come back in 3-6 months to do another ERG to confirm or reject the possibility of developing plaquenil toxicity, but my rheumatologist took me off the drug so I did not go back for more testing. Recently I got a second opinion on my lupus treatment as I have been in a flare since Dec. 2013 with pleurisy, and fevers. That doctor recommended plaquenil again but my rheumatologist and eye doctors say it&#39;s too much risk and little benefit as plaquenil is used to avoid flares and not good to start when you are in a flare. It&#39;s great you were able to go back on it if it helps you. Any advice for me?<br />Lupus for 33 yearsLupus for 33 yearshttps://www.blogger.com/profile/18153002594694521533noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-2578591490461204582013-01-15T12:21:08.302-05:002013-01-15T12:21:08.302-05:00Maria is you are out there, what food changes did ...Maria is you are out there, what food changes did you incorporate into your diet??Laurennoreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-72648025001046074012011-07-26T21:00:05.423-04:002011-07-26T21:00:05.423-04:00I have been on plaquenil for 21 yrs., before they ...I have been on plaquenil for 21 yrs., before they could tell me what the side affects were. Though my eyes were never affected, it never prevented or controlled any flare ups. After 5 months of following a completely new to me, food changes, I not only am not taking plaquenil or the 15 other drugs, 4 of which were also anti-inflammatories, which is just all plaquenil is. My levels are normal, all side affects are nil, and I haven&#39;t felt as healthy since I was 30. Hope to here from you, MariaMariahttps://www.blogger.com/profile/03686225378941795276noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-88053694068937245412011-07-21T14:40:33.868-04:002011-07-21T14:40:33.868-04:00Sara,
I wanted to share this short article which t...Sara,<br />I wanted to share this short article which talks about the OCT imaging in the context of its use in cataract surgery. The technique comes in very high regards by the sounds of the article and like you said is really being touted as a great advance for eye care. My mum had the ERG a few months back as she had several emergency cornea problems. I will ask her about her experience and report back. I for one would be very interested in your follow up on the ERG because our family eye doctor wants me to have one because of the high instance of ocular problems in the family.<br />There were quite a few articles about Lupus on this site too.<br />http://www.dailyrx.com/news-article/eyes-have-it-12315.htmlJenhttps://www.blogger.com/profile/16043275615125574058noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-13867215714632353862011-07-19T16:53:19.989-04:002011-07-19T16:53:19.989-04:00Glad I could be of service! Thanks for stopping by...Glad I could be of service! Thanks for stopping by...Sara Gormanhttps://www.blogger.com/profile/07608238591846611898noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-4624163635195609242011-07-18T13:33:45.855-04:002011-07-18T13:33:45.855-04:00Thank you for your post- it reminded me to make an...Thank you for your post- it reminded me to make an appointment with my eye doctor.Kara (Sisyphean Effort)http://karaversuslupus.blogspot.comnoreply@blogger.com